Why I Grieve Over My Children With Autism, And Why I Refuse To Hide It

Last week, I relived the experience of walking into a doctor’s office and being told that my child is on The Autism Spectrum. Our oldest was diagnosed at age two and now our youngest has begun the road to a diagnosis at age fourteen months. The experience is similar in a lot of ways to the first time around, but also very different. Similar in the emotional rollercoaster that it’s taking me on, and different in how I’m handling it. Both times, I grieved deeply. Most parents in this situation do. I went through, and am still going through, periods of deep depression, frustration and fear. I have to desperately pray my way out of bed every morning, I can’t focus, I can pump my coffee through an IV and still be exhausted, I cry whenever I’m alone…and sometimes when I’m not. (Usually in the most embarrassing of situations.)

I spent my first several years on this journey hiding my grief. First, because I felt the need to be strong. I felt that everyone was depending on me to stay positive, and I didn’t want to let them down. I also didn’t want anyone, especially my family, mistaking my feelings of grief for disappointment in my child or ungratefulness for all the blessings I’d been given. (A diagnosis could never, ever change how much I love my children or how thankful I am that they’re mine.) There’s a lot to do and take care of in the diagnosis phase and, with all that pressure to make sure my child’s needs were met, it felt almost selfish to take time for myself.

The rest of the reasons that I ended up hiding my true feelings the first time around were mostly tied to the responses I’d gotten from others when I told them the news of my child’s diagnosis. Though I know a lot of the comments were well-meaning, they’d often only make me feel worse. I’d typically be met with, “God won’t give you more than you can handle.”…”I just don’t see it. Maybe the specialists were wrong!”…”Do you think it was the immunizations?!”…”Maybe they’ll grow out of it.”…”You know you can cure that, right?!” or even worse…the awkward silence. None of these responses are helpful, but all of them have taught me that most people either fear, judge or dismiss what they don’t understand. It all made me want to crawl in bed and stay there until Jesus comes back.

This time around, I was very tempted to isolate myself during this difficult season. I didn’t want to deal with the awkward silence, the denial, or the ignorance. I was angry that no one understood why I feel this grief. Then, I was reminded that it’s extremely difficult for someone to understand something they’ve never experienced. That, if I’m ever to have any hope of actual Autism awareness, I had to be vulnerable enough to share the tough stuff. To share the the real, the hard, and the messy stuff of this journey. I can’t expect to promote compassion for Autism families while I’m hiding my true feelings behind closed doors.

So, for the sake of true awareness…for the sake of even one more person understanding an experience that millions of families are struggling through…Here’s why I grieve over my children with Autism:

Autism is a brick wall.

It stands between myself and my children.

It disconnects me from their world, and them from mine.

Once in a while, I’ll find a way to remove just one brick. A way to reach through to the other side. To reach into their world and understand them in some small way.

…But the wall itself will never come down. No matter how hard I fight to break through.

Many of my dreams for my children, and for my relationship with them, have died because of Autism.

Yes, my children are still perfect in my eyes. Yes, they’re still an incredible blessing. Yes, I still love them more every day. Yes, I will dream new dreams with them. Yes, Autism is just one part of who they are and not a definition of them.

…But it still hurts. It still breaks my heart.

I’m their Mama and I can’t comfort them. I can’t understand. Autism has taken that from me.

I long to truly know them and their world the way that mothers typically do. But I can’t. Not until Heaven. All because of that brick wall.

So, yes, I feel loss. Loss when my babies won’t let me snuggle them. Loss when they come to me crying and I can’t make the tears stop. Loss when they play alone in a corner because they haven’t made any friends. Loss when we can’t attend events as a whole family. Loss when I see that look in their eyes as they realize they’re different in difficult, painful ways.

I grieve because, in losing the ability in many ways to deeply connect with my child, I have lost a part of myself.

I refuse to hide my grief this time…because I’m not alone. Millions are grieving and millions more are unaware. We are meant to share in each other’s pain, to lift each other up, but we can’t share in what we are unaware of. I don’t want to be unaware. I don’t want my children to be unaware. I don’t want to disconnect my family from the world around them, even if it seems like the easy road to take. I want them to know that it’s ok to vent when life gets tough, and that it’s a good and honorable thing to listen to the pain of others. To just be there. Even if they don’t “get it”. To be the kind of people that, without judgement, can come alongside those who are in pain and help them through the messy, grief-filled parts of life.

As much as grief and pain and sadness hurts, as messy as it can be, and as hard as it is to hear and look at…I want to keep my eyes, my ears and my heart open. I want my children’s hearts to be open. If we numb our pain and are numb to the pain of those around us, we’re sending a message to the next generation that it’s okay to look away, to walk on past…to hide their grief and ignore the grief of those around them. I can’t send my children that message anymore.

I’m grieving. I know that, for whatever reason, you probably are too. That’s okay. Sometimes, life is so much more than we can handle on our own…But we can get through this together. If we stop hiding.

7 thoughts on “Why I Grieve Over My Children With Autism, And Why I Refuse To Hide It”

Thank you from the bottom of my heart for being truthful and vulnerable with your feelings. I’m still wiping the tears from my eyes as I find the words to try and tell you how much I can empathize and understand what you are going through. I have 3 special needs children of my own and my oldest, 12, (who has been diagnosed with everything under the sun since 3 years old : ADHD, PTSD, Anxiety, ODD, Tourette’s, etc…) was now diagnosed with ASD. My middle child, 11, has Down Syndrome and my youngest, 8, has been through a battery of testing including genetic testing and all they have come up with is ADHD, Separation Anxiety & Learning Disability. (She is going into 3rd grade this coming year and cannot read or write!!)
Anyway, my reason for giving you some information on my children is to let you know that I can relate to how you feel and how most people don’t understand what it’s like. I love each one of my children with all of my heart and wouldn’t change anything about them I just wish I could change how others see them and how hard it truly is sometimes. God bless you and your 2 precious gifts from God! You are truly an amazing Mama for those babies! Never give up!
Blessings,
Jenn

Jenn, My heart and my prayers go out to you. The journey has incredible purpose but that doesn’t mean it’s not the hardest, most painful thing we’ll ever do. If you ever want to chat, get in touch with me. You’re definitely not alone! I don’t even know you and I’m proud of you ❤ We can do this. We can find the strength. But we don't need to be strong all the time. Grieving with you.
~Amy

My youngest has been diagnosed with PDD. I expect an autism diagnosis in October after he sees the geneticist and has an MRI done. I suspect my older son, who is almost 4, is on the spectrum, but he handles it very well and is only slightly delayed. I don’t feel like there’s a wall between us. With my younger son… I’ve cried a thousand times since they told me yesterday. My mind is in a different world and all I can think is, “If I can just get him to where his brother is, I’d be so happy.” But his brother responded to his name and said more than ten words when he was two. Your post beautifully describes what I’ve been suffering through during the moments when I suspected and every second since it was confirmed.